Snapshots of an Enlightened Society
Travelling with Sebastien, my autistic son, has always felt like an adventure, a foray into the unknown, despite the fact that he has become an avid traveller over the past seven years. This is especially the case since his entry into puberty and his transformation from a relatively compliant child to an assertive young man with a mind of his own. For us, venturing overseas, particularly to a completely new location, where we are unable to anticipate Sebastien’s interactions with others and his surroundings, is an endeavour that is fraught with tremendous risk.
One such trip that had filled me with anxiety and trepidation was our three-week holiday to France in August 2013. We were heading to the family home of Jerome, my boyfriend, to celebrate the 50th wedding anniversary of his parents — a social event that would involve extended family members and long-time friends. To make the most of this holiday, our trip would also include a week of hikes in the Southern Alps and end with a road trip through the small towns in the Languedoc-Roussillon region.
On paper, this itinerary had all the makings of a wonderful trip, and if it had taken place before Sebastien’s entry into puberty, I would have been elated and excited. Instead, I was ripped up with worry inside. When I am out and about with Sebastien, the teenager, I experience a habitual dread in spaces where there are crowds. My ideal holidays typically involve forays into the depths of nature during the off-peak season, which would enable us to minimise human contact. The fact that our itinerary included two big cities like Paris and Marseille, not to mention a big and important family celebration, made the situation nerve-wracking. With just one violent tantrum at the worst possible moment, Sebastien could torpedo the festive atmosphere, alienate everyone in attendance, and ruin an important day for Jerome’s parents and his family.
Moreover, as Sebastien and I had not travelled to a first-world country outside of Asia since leaving the USA, my only frame of reference of how strangers treated people with special needs in a first-world country with a ‘Western’ culture is Los Angeles, Sebastien’s birthplace. Back then, Sebastien’s younger self had managed to trigger curses and insults from members of the public for relatively harmless social faux pas like uncontrolled laughing on the public bus. Throughout Sebastien’s teenage rebellion in Singapore, I couldn’t helping thinking that had we been living in Los Angeles, he would have ticked off people many times over and risked injury or even death, from his tendency to hover near cars and deposit garbage at ATM bins when people were withdrawing cash, not to mention his aggressive outbursts against me in public. In Singapore and parts of Asia, people tend to just gawk at Sebastien with disgust, annoyance, or fear, without confronting him directly. I did not know how the French would respond to Sebastien and his atypical behaviours…
Well, none of my fears about Sebastien’s encounter with the French public came to pass. And throughout our three-week journey to Paris and the Southeastern parts of the country, we encountered many locals, from complete strangers to Jerome’s friends and family members. Their attitudes ranged consistently from discreet and considerate acknowledgement of Sebastien’s handicap to warm concern for his well-being. Our three-week journey abounded with examples of the civility and enlightened attitudes of the French people from different walks of life… At the diverse carousels (and France seemed to be peppered with them) that were drawing Sebastien like flies to a candy stall, the ticket seller only took a second or two to regain her composure when I bought a ticket for Sebastien, the gangly teenager standing next to me. In fact, the ticket seller informed me that I could step up onto the platform with Sebastien without having to buy a ticket, if I liked. Sebastien was really quite a sight with his over-sized body scounged up in the motorcycle of the carousel in the touristy town of Nimes, but I did not feel embarrassed or uncomfortable for a minute.
On another occasion, a ticket seller for a tourist train at Avignon surmised Sebastien’s condition quickly and discreetly and gave us the discounted ‘child price’ for Sebastien, even though Jerome had asked for three adult tickets. I learnt that in France, it was common practice for the ‘child price’ to be extended to individuals with special needs, if no separate category of pricing was available for those with special needs. As a comparison, upon our return to Singapore, when we asked for a special price for Sebastien to visit the zoo, the ticket seller informed us that unless Sebastien could show a card from a special needs school, there was no special price for him! It did not matter that Sebastien’s intellectual handicap was plain for anyone to see.
Additional overtures of warmth during our French trip came from café and restaurant owners and waiters. At a brasserie in Paris, when we ordered plate of French fries for Sebastien — an item that did not exist separately on the menu, the waiter did not make a fuss about the order and served Sebastien without charging for it on the bill. In a small town, the café owner emerged from the restaurant to where we were seated and served Sebastien with a flourish, referring to him as a “gentilhomme” (gentleman). She later returned with a CD of computer games for him.
At one of the bed and breakfasts, the hospitable hostess went out of her way to make us, including Sebastien, feel welcomed in her home. When we stepped out for dinner, Jerome forewarned her about Sebastien’s tendency to hum and sing loudly in the shower and left our contact number in case she was concerned. Upon our return, she especially stepped out into the hallway to reassure us with the friendliest of smiles that Sebastien posed no problem at all and they were not in the least bit bothered by his “singing”.
The next morning, when we were congregated around a jovial and crowded table for breakfast, which included other guests, the hostess who was bustling around the table serving everyone with toasts, drinks, and cakes noticed that Sebastien seemed discomfited. She came over and lowered herself to my ear to ask me with respectful discretion whether he was alright and what food items she could give him. Both her considerate concern for Sebastien and her discreet, respectful manner by which she spoke to me, left a lingering impression on me.
Just months before, I had felt stung by our treatment from the MRT staff in Singapore when Sebastien had responded overexcitedly at a train platform by leaping in the air and howling. When the MRT staff approached us to get Sebastien off the platform, I had explained that Sebastien had autism and that they should not try to physically move him off the platform in his overwrought state. Instead, the MRT staff members informed me (albeit politely) that he did not care what Sebastien had and that he was just trying to get Sebastien off the platform. He had no clue that his mishandling of the situation could have triggered an aggressive outburst that could have ended badly for everyone, when he should have been deferring to my knowledge about Sebastien. Thankfully, a potentially explosive encounter was averted because Sebastien decided to leave the platform of his own accord!
Our positive impression of France persisted even through the last day of our holiday, when we approached a tuk-tuk driver in Paris to take us along the Champs-Elysées to the Arc de Triomphe (Arc of Triumph). It was something we did with some reluctance, as the tuk-tuk experience seemed to be a really touristy outfit; but we knew that Sebastien would love to ride on it. However, instead of hustling us into the tuk-tuk, the driver took me by surprise by first greeting Sebastien in a friendly fashion: “Hello Sebastien”. Sebastien was wearing a French version of a sign that stated his name and his autistic condition, as well as our contact information (he wears an English version in Singapore). Then he inquired in a casual and friendly fashion whether Sebastien would be fine on this ride because he knew an autistic child who was fearful of the bumpy motion of vehicles like the tuk tuk. Essentially, he had prioritised Sebastien’s well-being over getting our fare! The tuk-tuk ride turned out to be exceedingly enjoyable, as we exchanged stories about our experiences with autistic individuals. Despite the fact that we did not make it up to the top of the arch due to the rainy weather (our original plan), I did not mind for I was basking in the warmth of our interaction with the tuk-tuk driver and the overall trip.
Finally, there was the anniversary party that I had been so worried about. The event had a huge turnout of more than 50 guests: it was a social situation that was far bigger than any that Sebastien had ever experienced in his life. The situation gave me serious jitters at several levels. For a start, it is never easy being the ‘new kid on the block’: all the extended family members and longtime friends of Jerome’s parents were complete strangers to Sebastien and me. I wondered whether I would be ignored and bored, or how I would hold up with my level of French proficiency. And of course, I was worried about Sebastien: how would he cope with this ‘ordeal’ — a long social event in which there would be no particular activity of interest for him, except for the food and the colouring that I had brought for him?
While the situation had the makings of a possible disaster, what actually transpired was exactly the opposite. Unbeknownst to me, Jerome had sent his family and his cousins a link to the episode of the “Joy Truck” show that featured my homeschooling journey of Sebastien, his paintings, and our desire to start A Mother’s Wish to provide affordable activities individuals with moderate to severe autism. And apparently, all of them had taken the time to watch this 45-minute Chinese show with English subtitles. The moment we showed up, warm and friendly faces were surging at me with bises — the French greeting of two pecks on the cheeks. They gushed about what a wonderful mother I was and how delighted they were to meet me. Before long, I was caught up in the whirlwind of meeting with Jerome’s extended family and friends, putting faces to names that he had mentioned over the years. I was having such a great time conversing in French with these warm and effusive people that I had literally forgotten about Sebastien.
At some point, when I did get my head above the sea of people to look for Sebastien, I saw him lounging comfortably in a patio chair, surrounded companionably by other people, with a big grin on his face, as though he were soaking in the atmosphere. Whenever a plate of hors d’oeuvres or drinks was brought around, someone would be on hand to make sure that Sebastien got something to eat and drink. They would look him in the eye and give him a warm smile. Although they did not really know how to interact with him in a more substantive way, they embraced him as part of the group and made him feel at home. So despite the fact that Sebastien should have been completely overwhelmed by the fact that he was surrounded by crowds of strangers at the party, he was fine. Thanks to the collective goodwill of all the hosts and guests, Sebastien managed to sail through a party that lasted for more than six hours, involving a lavish buffet, several speeches by family members, and a slideshow. Sebastien’s yelps throughout the speech segment, as he did his colouring, was greeted with warm and understanding smiles from the audience within the vicinity.
What had left an indelible impression on my psyche as a parent of an autistic child was the casualness and the ‘matter-of-fact’ way in which the French people treated Sebastien with decency; doing so did not turn them into saints. Not once did they make us feel as though they were making special accommodations for him. Moreover, this attitude was not just manifested in the action of any one individual, but in the composite of the discrete gestures of multiple individuals in diverse contexts and locations. The cumulative effect of their actions illuminated their acknowledgement of Sebastien’s right and entitlement to a place in society. He is, first and foremost, a human being, who deserves to be treated with decency like his neurotypical counterparts. And if anything, he deserves a little more, for his life has been made harder by the unfairness of circumstances beyond his or my control.
When I marveled at their attitude to Jerome’s teenage nephew, he had looked at me with incredulity: “How else would one behave towards Sebastien?” And that was when I got it: as far as they were concerned, acknowledging Sebastien’s right to be treated like any human being was the least that they could do; doing anything else would make them feel like lesser human beings.
In searching for the most appropriate words to encapsulate this phenomenon, “enlightened” and “civilised” kept coming up. Nonetheless, the intellectual connotation of these words belies the emotional impact that the experience had exerted on me as the parent of an autistic child. This exhibition of collective goodwill, without any planning or premeditation, was something I had not experienced in all my years of raising Sebastien. For the very first time in my parenting journey, I could feel the lightening of the emotional weight on my shoulders as I went out and about in the public space with him! By this point, we had been living in Singapore for the past eight years. Until the “Joy Truck” show that thrust us into the public limelight for several months, most people had regarded teenage Sebastien with an air of fear, anxiety, and veiled disgust, which could best be summarised as “unhappy tolerance”. They seemed to be distressed about having to share the crowded public space at close quarters with such a strange creature, even angry at me for bringing Sebastien out into the open and intruding into their comfort zone. Instead of feeling like Sebastien’s guardian, I felt as though I was walking around with a ticking time bomb, with all the attendant feelings of stress and anxiety.
In stark contrast, as our trip in France progressed, I found my usual guarded self falling away, as I moved about with Sebastien in public. This collective affirmation of Sebastien’s presence in their midst gave me permission not to feel overly mortified when Sebastien behaved in an atypical way. After all, if Sebastien could act totally in accordance with the norms of mainstream society at all times, he would not be autistic. In an enlightened society that acknowledges the challenges that caregivers face, doing our very best (even if the outcome is less than ideal) ought to be good enough.
What all these French people we met could not have possibly realised was the value of their attitude towards us, which made us feel at ease in the public realm. To not have to feel anxious or worried in anticipation of how the public would respond to our autistic child is a gift that few who are not part of our autism universe could possibly understand. I hold each of these incidents and episodes close to my heart, including the smile that radiated from a young lady at the three of us across the tombstones of the Pere Lachaise Cemetery. It was just a smile, but in it, I could feel her support and encouragement for our challenging life journey with Sebastien. As a group, the French people whom we had encountered have cemented my belief that caring for special needs individuals should not rest solely on their families; society, in whatever little ways, can do its part to alleviate our burden.
While writing this piece, the concern that most Singaporeans would just respond by saying “If France is so wonderful, why don’t you don’t move there” was never far from my mind. After all, this was the reaction of my Singaporean acquaintances and friends when they heard my accounts. However, such a knee-jerk reaction would not have done justice to my intent in writing this article. Thus, I feel that it was imperative that I clarify my description of this trip and my aims in depicting our experience.
To begin with, it is more likely than not that we were extremely fortunate to have met enlightened individuals who were kind to Sebastien. As with any anecdotal evidence, one should not leap to blanket generalisations about an entire society. In fact, many French expatriates to whom I shared my experiences were pleasantly astounded by the great impression that their countrymen had left upon me. Nonetheless, what I could state with confidence is that our three-week journey in France offered a snapshot of what an enlightened society could be like. This fact is important, even if I cannot ascertain whether it is representative of France in all places and at all times, being a tourist who was only there for just a brief period.
At the same time, what we experienced in France in August 2013, did reflect the progress that France had made in transforming their mindset towards individuals with special needs. Jerome pointed out to me, just one generation ago, he had a relative who lamented matter-of-factly that they had to keep her grandson who had Down’s Syndrome; she pointed out that, in her days, he would have been made to “disappear”. It is thanks to the policymakers’ passage of laws and the implementation of policies to uphold the rights of people with special needs to services and supports that the mentality of the people has changed. The outcome could be seen in what we had experienced during our trip.
Essentially, the institution of such a mentality does not happen overnight. It requires a concerted effort on the part of the government and the people, as well as the passage of time, for new values and attitudes to sink in. Therefore, instead of exhorting me to move to another country, Singaporeans, in particular the policymakers, should be questioning our adherence to our narrow conception of a meritocratic society. It sets forth a tacit conception of people with special needs as a burden on society because they are unable to contribute to the economic development of the country. As a result, the Singapore government has felt justified in handing over the responsibility of educating special needs individuals to voluntary welfare organisations with inadequate apportionments of funding. The resultant outcome is that many families with special needs children are confronted with long waiting lists and higher school fees than their counterparts whose children attend mainstream schools that are generously funded by the government’s Ministry of Education. Families with special needs children are also expected to pay for individual therapy services out of their own pocket. In most first-world countries, education and basic therapy services are fully covered by the government authorities.
Even as I write these words, I am aware that Singapore has been making some progress in catering to this segment of society, albeit at a far slower pace than needed. Over the last few years, particularly since my formation of A Mother’s Wish social enterprise, I have also experienced the kindness and compassion of Singaporeans who have sought to show their support for Sebastien and individuals with autism. Thus, I am hopeful that if we can earnestly re-examine our attitudes and fight for more egalitarian government policies, then Singapore would be able to make bigger and better strides towards becoming an enlightened society.